40, fabulous, and feeling fine!

I turned 40 at the beginning of Feb and I feel great!

Not physically...no...but mentally, I feel great. Got a lot of aches and pains at the moment, and I've been suffering from a lingering cold for the past couple of weeks which has left me with awful catarrh.

I feel great mentally, because I feel like this is the first 'milestone' birthday in a while. I had a wonderful few days with family and friends, and felt royally spoilt. It's not often I do things where I'm centre of attention, but I went with it and enjoyed it immensely. I was shattered afterwards of course!

If I'm honest, when I was diagnosed at 18, I assumed I would be in a wheelchair by the time I reached 40. I was convinced! Even though I wouldn't say it was hanging over me, it was often niggling in the back of my mind (after all, who knows what's going to happen...it's an unpredictable disease) but, no. I'm not. In fact I'm thriving. 

I set myself a challenge to lose some more weight before my birthday, and I shed a stone over 6 months which was great (in fact showing me that I CAN do it)! I felt confident, got my hair done and felt like I could really ease into my forties with style.

Sure occasionally I have the odd wobble, where I think my mortality is catching up to me (don't we all?!), but overall so far so good. 

Life is cracking, compared to what it could have been. My MS is stable, my bipolar is fairly manageable, and I'm going to lose more weight to get down to a healthy BMI. From there, surely it's onwards and upwards? I mentioned on another post that my consultant was really pleased with my health at the moment, considering i've been diagnosed for 22 years. Nothing is certain with MS, and I know how lucky I am. I do feel that it isn't entirely by chance though. I do tend to look after myself pretty well, trying to get as much exercise as my body allows, and eating a varied diet. I count my lucky stars that I am mobile, happy, healthy, and feeling positive.

It's times like this though where I need to thank my beautiful family and friends for all of the help and support they give me. Because of them, I lead a fairly low stress life, which of course, helps MS and mental health conditions. I don't have to work, which I'm eternally grateful for and I have to ability to bumble my way through life. Doing things when I feel well enough, and resting when I don't. 

So here's to the future!

Me and Si

Navigating London and other stuff

This post is well over due.

It's all about the October half term,  but now Christmas is creeping up and it's been sat in my draft box for ages! I just haven't been in the right frame of mind to write. It normally comes quite naturally to me, but recently it's like staring at a blank wall. However, I thought I should persevere and finish this post, because half term was a really big deal for me. 

So here we are....

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I was knackered and frazzled, but we had a great time at half term.

We decided to stay in London for a couple of nights, mainly to see My Neighbour Totoro at the Barbican Theatre. 

To many this wouldn't seem like a big deal (after all it's about one and a half hours on the train from Bristol) but to me, it was a MASSIVE deal. 

I hadn't experienced London with the kids before, and I hadn't been for a very long time (when I had better stamina).

I had built London up in my head to be this traumatic place where I would really really struggle. I worried about the practicalities of actually getting round, and the mental impact being in such a busy place would have.

But.....I did it. I coped. And yes I was exhausted afterwards, but it's done and it really wasn't as bad as expected! The kids were fantastic, and we all loved it. 

Si and Ed navigating the Underground

My main worry was whether I was going to cope with all the walking - particularly getting from one place to another in the Underground. I remember long concourses, and having to stand for long periods on the actual train, having no chance to rest. But actually, it was fine. Sure there was a lot of walking, but the actual trains were eerily quiet so more often than not, I managed to get a seat. Si planned our routes well, and because the flat we had was down the road from the Barbican, we were fairly close the the Barbican tube station, and therefore on the Circle line. From there we could get to where we needed to go easily and without changing. Like I said, we were lucky in the fact that I managed to get a seat. If we'd travelled in rush hour,  I'm sure it would have been a different story. 

The Natural History Museum 

I took my folding stick with me, but only needed it on the second day - when we went to the Natural History Museum. Even then I managed the Museum without the stick and it was only getting back to the flat where I struggled a bit. It was very busy at South Kensington tube, near where the museum is, so I did do more standing around then. 

The Blue Whale

My Neighbour Totoro at the Barbican Theatre was awesome! 

My Neighbour Totoro is a Studio Ghibli film that came out in the 1980s, which is charming and lovely, and the theatre production of it did not disappoint. As a family we've always been a big fan of Totoro....ever since Lib being a toddler where we used to sit down and watch the film together. I found the theatre production emotional because all of these memories came flooding back, and I don't mind telling you that I got a bit tearful! We all adored it and would highly recommend it. 

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So yeah a big milestone for me, and I think it's all thanks to Tysabri. It's given me my stamina back. 

'Doing' London unscathed has given me so much confidence though to try and do more and different stuff. There's a fine line between being practical and cautious, and pushing myself to do a bit more though. Sure I managed our London trip, but that was a few days out of many....and I shouldn't assume I'm always going to manage things like that. For example, I wouldn't have been able to manage it this weekend.

A case in point though is when we go to Slimbridge Wetland Centre. I nearly always hire a mobility scooter because it's quite a lot of walking. On the one hand, it seems sensible to preserve my energy, but London has given me the confidence to try it without the scooter, and relish in getting the exercise. 

And exercise is key here. 

My weight loss journey is still on-going (I've lost nearly a stone so far) but I need to push on, so exercise and maintaining that 'gumption' is needed. I always find it hard to motivate myself in the winter though....I just want to hunker down and hibernate (like most people!). The frustrating thing though is that I know I'll feel better and have more energy when I've lost weight...it's just getting there. 

But Christmas is just around the corner...and my 40th birthday after that....so celebrations will be abound and I. must. not. put. it. all. back. on! 

Spasticity and other lovely symptoms

I've always suffered from spasticity when I've suffered a relapse, but not usually when I'm in remission. Until now. 

Spasticity

But what is spasticity? Spasticity refers to feelings of stiffness and a wide range of involuntary muscle spasms (sustained muscle contractions or sudden movements). It can vary from mild muscle stiffness, to more uncontrollable shaking and spasms. In the past, when I had a relapse, the stiffness would be extreme which would make moving my legs hard, let alone walking. I used to have to hobble about.  

Current symptoms

Recently I've noticed that I've got stiffness in my right leg in my thigh and around my knee. This is making walking difficult, which is a real pain. It's odd getting a new symptom in remission. Maybe it's just something I need to expect since I've had MS for so long.

Or maybe there's another reason. It could be because it's starting to get a bit warmer now, or maybe it's a relapse? 

What is a relapse?

The definition of a relapse on the MS Society website "a relapse is defined by 'the appearance of new symptoms, or the return of old symptoms, for a period of 24 hours or more – in the absence of a change in core body temperature or infection'". Symptoms you have experienced before, or perhaps grown used to dealing with, might appear in a different part of the body.

Now it mentions core temperature, but it certainly hasn't been hot enough for me to really suffer with the heat. I first noticed it when we were on holiday at the beginning on half term, so maybe I've just been overdoing it? 

Mystery pain

However, now I sit down to think about it, I have been suffering from a bad elbow pain over the last 6 weeks. It sounded like tennis elbow when I googled the symptoms, and I've just been waiting for it to get better, but according to another article I've just found it could actually be my MS. It's a real burning pain in the muscle around my elbow and on my arm, and it's very stiff. It's hard to straighten my arm too. I've never had it before and is persistent to say the least. 

The fact that the symptoms are all down the right side of my body, and they are new, leads me to think it may be a mild relapse but luckily I have a phone call with my consultant on Thursday anyway so I can discuss it with him and try and work out what's going on. 

In other news...

We had a great half term. We went to Whitemead Forest Park in the Forest of Dean for a couple of nights and it was loads of fun. I heartily recommend it! I even managed a day at out Birdland nearby in the Cotswolds. Nice to have some quality family time.  

Me and Lib at Birdland

Tales from a far off land

What a holiday!

It was everything we needed - fun, laid back, and adventurous. The kids had an amazing time going on a plane for the first time.......but how was it for me? It's no secret that I was anxious about travelling again but I am pleased to say that it was great. Don't get me wrong, I had a couple of days when I was really tired, but the actual getting there was fine. 

The benefits of airport assistance

I'm so so pleased I was sensible and organised airport assistance. When we got to Heathrow airport there was a bit of a queue for it, so me being me, I thought 'hmm...maybe I can do with out it'. But we waited and I'm so glad we did. I had underestimated how big airports are. Once we had checked our bags in, we were given a wheelchair in Heathrow, and Si pushed me around. It meant we were still independent, and could have lunch which was good. I didn't get a sunflower lanyard in the end, instead I kept my stick on show so people knew I was disabled. This helped a lot when I had to ditch the chair and had to get a shuttle bus to the plane, because it meant someone kindly gave me their seat so I didn't have to stand. 

Bigger than I remember

The airport and IcelandAir were fantastic, and I felt well supported. When we arrived in Keflavik, there was a wheelchair waiting for me to take us to baggage reclaim, and again I realised how I would have struggled without the wheelchair. It was a long walk, and I'd forgotten how much standing around there is at baggage reclaim, and with no seats around it would have been tough. 

The airport assistance going back was great too. We didn't have to wait long for assistance, and we whizzed through security, which again is a lot of queueing I didn't have to do. We also got priority boarding onto the plane. 

So after all that worry, the elements I were most anxious about turned out to be a breeze.  

For the first time I don't feel scared of being out of my comfort zone. The kids were absolutely fantastic too! Not that I expected them to be otherwise, but now that they are older they knew the importance of us all sticking together. They loved the flight, but after the initial fun of taking off, realised that it was actually quite dull sitting on a plane. 

Once we got there though, we had a great time. The Airbnb was lovely (though we did have a few mishaps. Namely the shower being blocked and flooding everywhere on the first day, and Si getting locked in the bin store on the last day!) and was very central in Reykjavik. Just 5 minutes down the road from Chris and Bara's place which was really handy. Reykjavik centre itself is great, and everything we needed was within walking distance. 

Whale watching

One highlight was the whale watching excursion for sure. The kids, especially Ed, were overjoyed to be there, and it was a beautiful day. We saw humpback whales, and though I didn't get a great photo, it was a fantastic experience. It did tire me out though and I spent the next day in bed. I was so excited to be watching for the whales, I stood for a lot longer than I should have done, and paid the price. I wasn't too sad to be missing out on things though, because I knew it was for my own good. And the rest helped immensely. 

Lib whale watching

Humpback whale

Ed getting excited

I still managed a lot though, so all in all it was a great trip for me. We also saw the geysers, Gulfoss (or the Golden Falls) and Thingvellir National Park which was gorgeous. So I managed a great amount. :)

We also swam in the local pool, with different pools and hot 'pots' or hot tubs. There was also a steam room which I sat in for a bit then instantly regretted it. Tingles ahoy! I felt very tired the next morning, as relaxing as it was for me. The kids, of course, were in their element - they love a swim! 

I'd like to say a big thank you to Chris and Bara too, for helping us get around, and being so supportive during our week. It wouldn't have been the same relaxing experience without them!

New horizons

The thing I've learnt about the experience, is that with the right help and things in place, I should have the confidence to give anything a try.  Travelling with MS and bipolar is a challenge, but not one that can't be overcome. It's given me the confidence to do it again, and maybe even go somewhere warm (!).  The kids would be perfectly happy if all they could have done was swim every day so again, if I have things in place (namely air con!), there's no reason why I can't enjoy a warmish holiday somewhere. The kids would adore it!

Something to think about for the future, for sure. 

At Gulfoss

You mean I have to leave the house?!

So something very exciting and scary in equal measure has happened. 

We've booked a holiday. 

To go away from England. On a plane. 

Now I know what you're thinking.....hardly scary! But hear me out.

This is the first time I have been out of the country for nearly 10 years...the first time the kids have EVER been out of the UK. Holidays abroad have always scared me and I'm way out of my comfort zone. We're going to go to Iceland and I KNOW it's going to be great, and I don't need to be worrying but I can't help it. 

In fact, I'm going to break down my worries now to prove to myself that I have nothing to worry about. 

Worry number 1: Getting to the airport and navigating parking. 

Solved: To aid my worries, and make life a whole lot easier (seen as there are 5 of us) we're going to get a taxi from door to door. This saves a lot of hassle, and as we fly in at 9pm on the way back, we don't have to worry about staying in a hotel, or driving back late at night. To be honest, I'm not sure all 5 of us and luggage will fit in our car anyway! It doesn't work out as too much more expensive and will put my mind at rest. 

Worry number 2: Navigating the airport without getting too tired. 

Solved: We're flying from Heathrow and I've decided I'm going to get airport assistance. When we went on honeymoon to Finland, 9 years or so ago, I got airport assistance and it was a revelation. I can't say I enjoyed it (there were a lot of stares) but it's a necessity. The last time I travelled without assistance (a few days spent in Geneva to see a gig) I ended up getting so tired, I missed the gig and it totally ruined things. So yeah, I know it needs to be done, but it makes me feel so.....disabled. I'm obviously going to take my foldaway stick with me in case I struggle but I'm going to get a sunflower lanyard to show I have a frequently invisible disability as well. You can purchase a sunflower lanyard for travel here, and they are recognised in an increasing number of airports (Heathrow and Gatwick included...as well as Keyflavik - the airport we are flying into at Iceland). It will put my mind at rest to know that I have a visible sign. 

Worry number 3: Struggling while I'm in Iceland.

Solved: Now this is a tricky one, because it really depends on what is on the agenda etc. I know it's going to go against every fibre of my being, but I need to be sensible and rest at the accommodation if I need rest. Even if it means missing out on stuff. It will be sad if that happens, but you never know, I might be ok. I think I'm just going to have to put things in place to help. Take my folding stick with me everywhere so I have physical support if my legs gets weak. Try not to do too much walking in one day so space things out. The main reason we are going is to visit Si's Dad, Chris, and his wife Bara. It will be so nice to spend time with them in the beautiful Iceland which is what I need to remind myself. We're going to visit family, and as me and Si have been before back in the day, it's somewhere familiar. I really don't have to worry. Iceland is an incredible place, and Rekyavik is not too busy.

Worry number 4: My passport

Solved: This has actually just been solved already. My passport was due to run out in October, so I needed to arrange a fast-track renewal. To do this I needed to drive myself to Newport. Technically only 40 minutes away, I find driving to new places plays havoc with my anxiety. However, I did it! I was so stressed out about it (had I done the application right? Were my photos ok? Was I going to get sent home again for lacking a vital piece of paperwork?) but it was fine. I coped. It was kind of scary because there were strict security things in place once I got there, but the lady I saw was lovely, I had done everything correctly, and I'll get my passport within a week. Massive mental hurdle - solved.

I feel silly for worrying, but travelling when you have a disability is tricky. Just being away from the house and not being in my comfort zone is a big deal. I need to navigate a long journey when I can't guarantee I'll be well. That's stressful! I know I have my family to support me though, so I'm sure everything will be fine. I shouldn't say no to these things for the fear of how I might be. Life is for living!

Photo by Robert Lukeman on Unsplash

Gratitude at Christmas

Christmas can be a difficult time for many, and I think it's really important to show gratitude for what you have. Often our excesses and privileges go unchecked at Christmas, so I wanted to write a post about what I'm grateful for during the festive season. 

I'm grateful for my family and friends

Christmas for me is a time to share with family, but there are many that can't. I'm so grateful for the kindness and support my family and friends show me. Whether it's Sheila helping me in the house, my friends helping to pick the kids up from school when I'm having a bad day, the moral support my Mum brings in our daily chats, or the kind hugs the kids give me when I'm not feeling very well, it all means so much to me. I want to say thank you to all of my family and friends for always being there for me, especially in the challenging times, and I love you all. 

I'm grateful for love

Being happily married is a blessing, and I wouldn't be able to do...well...life if it wasn't for my husband Si. We've been together for 16 years, and it's a flown by, which I think is a testament to our love and commitment to each other. I love him with all of my heart, and his ability to make me laugh and smile in even the toughest times is incredible. Relationships can often become strained at Christmas, but we have an easy, happy household with the children which makes me feel eternally grateful.

I'm grateful for the peaceful times

I'm not the best sleeper, and have taken to getting up early on a lot of days before the kids wake up. This period of peace and calm has been a blessing to me. I sit quietly downstairs, and take in how lucky I am to live in a lovely house. I love my kids more than I can say, but they have their moments of chaos - like all kids. Having a time of the day where I now I can reflect on things, write and read had been great for my mental health.  

I'm grateful for my home

We live in a wonderful house in Bristol, that gives us enough space to all live happily and enjoy life. It is warm and comfortable. There are increasing numbers of people in this country and they are homeless. I can imagine how awfully difficult this is and how Christmas must heighten the anguish and stress. I give to Crisis at Christmas every year, for that very reason. There are many different reasons why people end up being homeless, and I have to say, our current government doesn't help. It can happen to anyone, as  circumstances are never set in stone. I'm grateful every day for the fact that we are lucky enough to have a roof over our heads. 

I'm grateful for my health

Sure I have MS, and my mental health isn't great, but I'm grateful. When having a bad moment, I've always reminded myself that though I do have health issues, things could always be worse. Even with my MS, when I think back to being diagnosed, I had assumed that I would be in a wheelchair after 20 years, and the fact I'm not is amazing to me. My consultant marvelled at how well I'm doing when I saw him recently, and I think he's right. I have days (though they are few and far between) when I can be symptom free which is fantastic. Sure I could not have MS and bipolar, but I do, and as it can't be changed, I may as well make the most of it. I'm also grateful for getting through Covid unscathed, and coming out the other end feeling well. As my Mum's Covid journey (after she was diagnosed with long Covid) has shown me, it could have been much much worse. 

I'm grateful for the NHS

Talking of health, I couldn't not thank the NHS. I am on the amazing Tysabri that makes it easier for me, and it is given to me for free. I'm grateful for my MS nurses, hospital team and the mental health team. All of them have played a huge part in me being stable and their advice and regular check ups have meant a lot to me. 

I'm grateful for the food on our table

Christmas for me is all about cooking and baking. I love it! But I am so so grateful for the fact that we have a kitchen full of food that we can enjoy at Christmas time and beyond. More people are relying on food banks in this country, to the shame of our government, and it's important we remember those that are less fortunate than ourselves. 

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In the spirit of the season, can I also say a big thank you to everyone who reads this blog. It is a lifeline for me to write about my experiences, and knowing that people actually read it is amazing! As I've said before, I only started 10+ years ago to offer some support to others with MS who are starting a family, and since then it's grown and become so much more to me. Writing is cathartic for me, so it has provided me with somewhere to air my thoughts and feelings, and given me a bit of a mission in life - to show people that an MS diagnosis doesn't have to be the end of your life, you can have a family, live fully, and be happy. 

To all my readers, friends and family, I wish you a very Merry Christmas, and may 2022 be full of good health and happiness. 

Photo by Tina Vanhove on Unsplash

 

Enjoying the festive season with MS

Christmas for me, means family time and making it special for the kids. 

Santa hat on and a smile on my face

But I’m starting to think I should be making it special for me too!

Historically, I’ve been completely burnt out by Christmas Day because I’ve been trying to cram so much in during the festive period, but this year I’m going to make a change in the hope of keeping the awful fatigue at bay. 

This year I’m going to try and be a bit more measured. After a strange Christmas period last year (due to lockdown) I’m determined not to get too over excited and take part in every Christmas activity going. This ultimately leaves to burn out, and if I get tired and fatigued, my walking is affected meaning I struggle to do the things I really need to do. 

No I’m going to take it all in my stride, and be organised. Wrapping will be done in good time, so I can enjoy Christmas Eve and have an early night. There are certain tasks I do each year (like make a door wreath) that might have to be an optional extra instead of paramount.  

It leads me on to traditions that I can do with the kids, that I know I’ll be able to do each year regardless of fatigue. Baking is always a great Christmas activity to do with the kids that is low impact (I can sit down for most of it as I supervise), and as we all know, me and Lib love baking! This year, we're having a sticky ginger cake in lieu of a Christmas cake, because Ed doesn't like fruit cake, so that'll be something to do with the kids. It's a shame we can't make it in advance though!

The tree is up, and looking lovely, and I was grateful for the help this year. Lib and Ed gave up incredibly quickly last year so it was left to me to decorate. This year though, they enjoyed it!

Though it may sound selfish, self preservation is the key to surviving the festive spirit with MS, and doing things within moderation. I've realised I need to not get bogged down with the stuff I think you need to do. That being said, I enjoy it all! There's a fine line between doing what I want to do and not getting too burnt out. I have to remember that Christmas is about family, friends and love, so I need to enjoy it.....within reason!

 

I hope your festive season is relaxed and wonderful this year!

 

Back to school and back to a bit of head space

It's a beautiful day today - the sun is shining, there isn't a cloud in the sky, and I'm sat in the shade in the garden, with the guinea pigs, enjoying the peace and quiet. Because....hazaaaa...the kids are back at school. 

It seems an incredibly long time coming, and after two school years of fits and starts and home schooling, it's understandable. I'm so so proud of my two for their resilience for getting through the last two years of Covid affected life, and as far as the school is concerned, things are kind of back to normal. Sure they will still be vigilant, and things like hand washing and sanitising are still going to be prevalent, but there are no more class bubbles and no need for face masks when picking up/dropping off. 

It feels nice to go into a school where things seem normal, but I can't help but think things are normal too soon. We're surely not out of the woods yet, if the current rates are anything to go by, so is it really right, to have school children and parents mixing as normal? It seems a bit dodgy if I'm honest!

Needless to say though, I'm happy they are back, but also miss them! They've done so well, and have headed back to this school term unscathed and ready to get stuck in. They still have their smiles, which is all we wanted after everything. 

We managed to get away a couple of times this summer, which was great. Firstly to visit my family in Lincolnshire, and second to Devon to stay in a yurt. Both holidays were just what we needed and we enjoyed them immensely. And yes, we got guinea pigs! About three weeks ago, and they are settling into the household nicely. We have them housed in the kitchen though, which means I've had to put The Natural Cupcake Company on hold. I can't remember if I mentioned it, but I restarted the little business I did before Lib came along - a vegan cupcake business. I started it up again this time last year, and business was great. However, I just couldn't sustain in. As usual my MS and anxiety got in the way of working, and I just couldn't keep up with it. My anxiety was off the charts and I really felt unwell. So I made the decision to take a step back.

Then following on from that, I changed my diet to incorporate fish, so I was no longer vegan. That coupled with my health meant that I had to rethink things. I almost felt a fraud at the thought of selling vegan wares and not being vegan myself. It didn't sit well with me. Then adding two rodents living in our big kitchen...albeit in a cage....to the mix doesn't lend itself to running a vegan catering business! 

I feel relieved to have made the decision not to continue though, which means I've made the right choice. First and foremost I need to make my health a priority, and I'm finally accepting that I can't work at the moment, and that's ok. I'm hoping to write more to keep occupied and start up swimming again...plus there's the on-going quest to lose weight (which never seems to happen!). The kids going back to school, and me settling in to looking after myself and the home feels like a fresh start this year though, and it's nice. 

Enjoying an afternoon at Babbacombe Model Village

Ready for school

Me with Rocco - one of our new guinea pigs

Self-Crippilation

It's another mini heatwave, and I was coping alright with it for once. 

I say 'was'.....

I've been trying to get back on track with living a healthy lifestyle recently. I'm concentrating on the Swank diet by cutting back on processed foods (apart from my vegan cheese slices...who am I kidding...I NEED those bad boys!), saturated fat and trying to do more exercise.

I bought a FitBit earlier on in the year to encourage me to keep on the move and gradually build up my step count, which was working. Generally speaking I know that if I do around 6000 steps a day then I'm having a good day. Yesterday I did 10,000+ steps. On a hot day. 

So I probably would have been fine doing that. After all, that was over a whole day, and it was only because I managed to get a lovely walk in with hubby during the coolest part of the day. No, what killed me were the swimming lessons. 

Every week, Ed and Lib have their swimming lessons and though they used to be at the same time, recently it's changed so they are one after the other. These lessons absolutely crippled me. 

1. It was really hot in there.

2. I had to stand up for the whole hour. 

The seating is sadly limited there, and it seemed particularly busy. Now, I'm not one to prod someone on the shoulder and ask them if I can have their seat. I know I could do, but the thought makes me feel uncomfortable because again it goes back to the age old conundrum of not 'looking ill'. My MS is not visible a lot of the time, and I think because I try to remain upbeat about things, it can seem I'm absolutely fine. As I looked around me at swimming at the people sitting down, I thought, how many of you have health issues too? I suspect, more than you would think. 

No, I wouldn't ask someone to move and give me their seat....unless I was suffering a relapse and seriously struggling. Though as I write that I can see how stupid I am. After all, a lot of the problems that come with MS come from the after effects you feel and I was struggling. I just wasn't at my absolute worst...so what?Therefore I thought I wasn't bad enough to ask for help?!  Because I allowed myself to stand for an hour yesterday, I'm partially crippled today. My feet are burning and tingly, my knees are stiff and my fatigue is off the charts. I've allowed myself to become that...knowing full well yesterday that I would be suffering today. Instead of watching the kids, I could have been sensible and gone to sit down in a cubicle somewhere, but that's just not me. They love it when I watch!

Yet another trial of being a Mum with MS - living up to your children's expectations. 

It's really really hard. Whether it's forcing yourself to watch them swim when you're in pain, or agreeing to play when you are fatigued and really not up to it, MS certainly makes things more challenging. 

My saving grace is that I'm not working at the moment, so I can just rest and take it easy today to give my legs a chance to return to normal. I have definitely learnt that next week I need to be taking a stool with me to try and avoid all this! 

Sore and swollen this morning

Over-doing it in the Easter Break

Well, we're one week into the Easter holidays, and today I. am. knackered.
It's one of those days where you feel like you need to prop your stinging eyes open with matchsticks.

However, I have done a lot, so there's no surprise that I'm feeling it now.

Firstly, as I mentioned before, we headed to Wales for 4 nights.
We stayed in a lovely Airbnb near Narberth in Pembrokeshire, and thank lordy the weather was good. We only had one drizzly day, which was a miracle!
We had lots of eating nice food, beach time and fun at various attractions - the kids loved it!

One day we decided to go to Folly Farm, and I bit the bullet and got the mobility scooter out to help me. The do have wheelchairs to hire there, but I don't know about you, but the thought of someone pushing me around makes me feel much more self-conscious.
It was a lovely day, but I was stiff afterwards. I can't seem to win! On the one hand, I need the scooter because my fatigue is too bad to walk all of the way round, yet because I've been sat on a scooter for the best part of a day, I end up being stiff and in pain which affects my walking anyway. I think I'd rather go with the stiffness though, because there's nothing worse than walking somewhere and realising you can't physically get back to where you started. Unsurprisingly, it makes me panic.

Here's me rocking the scooter with Libby. 

My experiences recently though have made me realise that I need to get a new scooter. It's fine because you can take it apart and put it into the car in bits, but the problem is that it's cumbersome, and the battery is soooo heavy. I would struggle to do it alone, and that's on a good day. Which doesn't make it great for independence. I've seen one that is folding and lightweight, but at £2500 it's an expensive bit of kit. Something to save up for though, definitely. Maybe if I had a less cumbersome scooter I would use it more and try and get out there a bit. Now that Ed's at an age where he doesn't run off willy-nilly (most of the time!) if I had a lighter scooter I could take the kids out on my own to one of the attractions near home, like the zoo. 

Anyway, aside from Folly Farm we went to the lovely beaches around Pembrokeshire, the Dinosaur Park (Ed in particular was in his element), and Saundersfoot. We took the dog on holiday too (as dogs were still allowed on the beaches) so he got some nice walks. It was just a really nice family time. 

Of course I ended up drinking and eating far too much, but that's the whole point of holidays right?!

Since we've been back we've been full-on in the house though. Do you remember me saying that as a project for when Ed starts nursery 4 days a week, I was going to decorate Lib's new bedroom? Well....I was impatient (as usual). 😁

Yep, since the holiday I've decorated Lib's room, we've put up her new bed, moved Ed into his new room, I've painted one wall of the new guestroom, we've put the bed up, AND cleared the little loft out. It's like I've been taken over by a new woman. My energy levels allowed me to do it all, which was amazing. Ok, so I'm feeling it now, but at least I feel a sense of accomplishment as I rest. 

Plus, the house seems so much more spacious and relaxing now that everything seems to have it's own place. *breathe a sigh of relief*

All in all, a bloody good holiday, and we've still got 5 days left! Of course, it does mean that I'll be stuck for things to do once Ed bumps up his hours at school, but maybe if things are sorted in the house I might actually rest!! Only time will tell. 

Me at Amroth beach

Small victories (aka I managed Harry Potter Studios)

I should have written this post before the previous one - it's been sat in my outbox for ages!

I had a fabulous weekend the other week.

I went to London with my good friend Liz and we laughed and drank and relaxed and saw the Harry Potter Studios! Harry Potter was such a big part of my life growing up. I started to read the books fairly late at 18, just when I'd been diagnosed. I found the whole Harry Potter universe a fantastic distraction from all the shit that was going on, and it really got me through it. So it's very close to my heart. 

Going to the studios was a really big deal for me but I wasn't without anxiety (something of a daily occurrence now it seems).

Firstly the thought of driving to London made me anxious. As it turned out it was absolutely fine (despite the biblical rain on the way) and I realised that driving on one motorway (it was the M25 particularly that gave me the willies) was the same as driving on any other motorway.

I got there and we chilled out in the hotel spa for the rest of the day, had a lovely massage followed by a lovely dinner and many cocktails (pornstar martini - my new absolute favourite!).
Woke up bright and early on the Sunday, and headed over to the Warner Brothers studios. And what a day! If you are a Harry Potter fan, I heartily recommend it.

I took my mobility scooter which turned out was a good thing because I wouldn't have been able to get round the thing without it. I would have struggled to walk up the first concourse, which was like a flipping airport! It was perfectly accessible for wheelchairs and the scooter, and apart from a very bumpy Diagon Alley I found it a breeze.  Sure there were moments when it wasn't great being on a scooter (mainly people standing in front of me so I couldn't see the displays) but overall I felt comfortable and not too self conscious.

I found it so interesting seeing all of the behind the scenes stuff, though it kind of made me sad that I never pursued my dream to do something behind the scenes in film and television. I think I would have liked to do special effects makeup. I was often messing around with it in my room when I was younger, and seeing it all at the studios was fascinating. Liz said it's never too late, but I feel like I've missed the boat big time with it. If I did train up, it's such a competitive field, it's not flexible, I've been out of work for 8 years, and I'm disabled! Kind of think the cards are stacked against me!

Hey ho though. I was still good to go, and thanks to my dear friend Liz it was a great experience from start to finish.

In front of Dumbledore's office

Diagon Alley with Liz

I needed a few pics out of the scooter and I found a wand :D

Pseudo-relapse...or not?

No sooner did I think things were looking up, that I start experiencing symptoms again and I suffered a pseudo-relapse that lasted for about a week.

What on earth is a pseudo-relapse?! Well, it's when you have a symptom flare-up which has nothing to do with the course of the disease (ie. no more damage has been done in the brain or spine). They can be caused by all sorts of things - heat, exhaustion, fever, viruses and infection, for example.
I think I probably had a virus because there have been so many bugs that have been floating around our house since the kids started back at school.

Whatever the reason was, my walking was affected (I was dragging my right leg and my knees went stiff), I had dizziness, loss of concentration, fatigue and a lot of stabbing pain in my legs. It wasn't fun.

The MS nurse thought I could actually be having a relapse, but the Tysabri could be holding it at bay. Who knows with these things? If that's true though, then Tysabri is truly a great drug! I do think I was pretty exhausted too though, so that wouldn't have helped. It's been half term, and the kids have been pretty full on. We also had a Halloween party that Lib hosted, but I of course did most of the food. It was fun but tiring, and as usual, I did too much. I didn't want to let her down though, because she'd been looking forward to it for so long. Luckily Sheila and my friends were happy to lend a hand.

Needless to say, things have sorted themselves out now though, and I'm pretty much back to 'normal'.
One thing that helped massively was a little holiday we took to Dorset straight after Halloween. We only stayed for a couple of nights, but a change of scene is always great when you feel poorly, and I loved being near the beach. We explored the Jurassic coast, went fossil hunting on Charmouth beach, and caught up with family. It was great! 
On our first day, we went to Monkey World, and I took my mobility scooter because I couldn't walk that far. It was really cold, and my legs were freezing, but oddly enough it actually helped with my walking afterwards. I guess the cold helped reduce down the inflammation.
Obviously a lot can be said for ice baths and cold showers next time I feel ill!

Back to earth with a bump now though, and the next fun obstacle to overcome is when I head to Harry Potter World with one of my best friends, next Saturday. I've pimped my scooter especially for the occassion (black and sparkly)! I love Harry Potter, and have always wanted to go, so it's going to be brill! I will undoubtedly keep you posted, and my next post will be full of photos of me drinking Butterbeer! So excited :)

 Me at Monkey World....freezing my buns off!

Charmouth beach

Me and Ed on the beach

West Bay - where we stayed

Lib looking very cold!

The Self-Induced Relapse

Ah, the havoc kids parties can create. Not only is the house a tip afterwards, but they shake me right to the core. Lib was 6 the other day, and we had not one, but two parties for her - a family one, and a friends one. I remember last year saying I would never do two again, but low and behold I did not heed my own words this year.

I love them, I really do, but the planning, executing and aftermath takes it toll. I did a hell of a lot of baking (which again, I love) but that ultimately means a lot of standing in one place. Not good for the MS! Or in other words - strike 1. Then there’s the running around at the actual parties - strike 2 for the MS.

Strike 3 comes from the bipolar. Running on adrenaline and manically planning things means I tend to become too high because my body can’t regulate things properly. And what comes up, must come down, so after everything was done, I crashed on an epic scale and ended up in bed for nearly 3 days. I became tingly and fatigued, and was suffering from exhaustion and depression. So yeah, another example of how everything takes it’s toll.

It wasn’t a serious relapse, so I didn’t get in touch with the MS team and I knew what it all stemmed from, but in my mind it was what I like to think of as a minor-relapse. One that will ultimately get better after a few days of rest. And it did, so everything is fine. But it did get me thinking about how fragile life with MS can be. Just a simple thing like organising a birthday can derail things on an epic scale. But how am I meant to cope with life as a Mum of two kids and still maintain an even keel on my MS? Life with kids is hectic, and not exactly predictable. I guess the answer is help. Asking for it, which I confess I’m really bad at doing, and accepting it when it’s offered. Plus, and perhaps more importantly, I need to accept that perhaps I can’t do what ‘normal’ Mum’s can do. Working around this is going to be tricky for me, mainly because it means that at 6, Lib is now old enough to take on board things that are explained to her. So is it finally time to have a ‘conversation’ with her, or do I just carry on casually mentioning my MS in passing in the hope that it sinks in? It’s a tricky one for sure.

Cake cake cake

Autumn has arrived...

Great British Bake Off on? Check.
Considering putting on the heating? Check.
Raided the jumper box under the bed? Check.

Yep...Autumn is officially here.
My favourite season!
My body literally gives a sign of relief when it gets cooler. But great things have occurred this year..after all I've managed to go through Spring and Summer without having another relapse!
Tysabri must be working wonders. It's such a nice feeling to think that I'm on some drugs that are actually helping now. They do tire me out after I've had had the infusion, but that's a small price to pay for a drug this good. My one fear is that one day I'll be positive for the JC virus though. If you remember, the JC virus is a dormant virus that, when it becomes active, greatly increases my chances of getting PML (a brain infection). Because of the way Tysabri works, the body can't fight the infection and so PML can lead to severe disability or death. Often people remain on Tysabri even though they become positive for the JC virus, because the chances of getting PML are still 1 in 1000. But as it's 1 in 10000 at the moment, that's quite a leap, and one I'm not sure I'd be willing to take by carrying on with Tysabri. I guess it's not worth thinking about now, after all it may never happen, but I confess it has been in the back of my mind recently.

Back to the hear and now though, and I'm glad that we're starting to get back into a routine as a family too. Lib has started back at school (as Year One!) and Ed is still enjoying nursery, thank goodness, so things are ticking along nicely. This Saturday we managed a day trip to Bath to go the Egg Theatre to see Sarah and Duck. There was much walking and a bit of standing around, namely on the train, but I managed it. That being said though, I was in bed the following day, and limping the day after that. I guess it's still swings and roundabouts at the moment. It was nice to get out and have a family day together though. We just need to find that balance between having a nice day out, but one that doesn't tire me out too much :)

Oooh....I've had another guest blog post published on the MS-UK website. They have asked me to contribute once a month, which has really perked me up because I've had complete writers block recently. Even writing this has been a challenge.
The link to the blog post is here: Summer Holiday Musings
I shall persevere though. I've been writing children's books too, and as I'm getting better with each one, I'm hoping that one day I'll be able to be published. That's the dream anyway. It just seems like a bit of an uphill struggle at the moment. Onwards and upwards though!

Ed loved his first train journey!!

Summer holidays

Between you and me, I secretly like the summer holidays. Sure it's knackering, but it makes me far more creative in my parenting. I get stuck in a bit of a rut with the kids sometimes. Lib being off school gives us more options to do stuff, so instead of me having to rely on weekends (many of which I've been ill) to do fun stuff with the kids, in the holidays we can be spontaneous and head out when I'm feeling ok.

Today I managed to take them to The Wild Place all by myself! Normally I'd have another adult on hand just in case I got tired, but I felt confident enough to do it, so off we went. It was lovely to do something a bit different on my own with the kids for a change.

I enjoy The Wild Place because it doesn't get busy in the same way the zoo does, and there's so much outdoor space. I find the zoo very claustrophobic and really quite stressful whereas at Wild Place it's much more about meandering about. Plus there are giraffes and zebras so Ed was one happy bunny!

We're off on holiday to Wales tomorrow, with my whole family. Fingers crossed the weather will be ok enough to get some days out - otherwise I fear we're all going to go stir crazy! After such a bad week last week, it's like a huge weight has been lifted from my shoulders. The fog of depression has gone, so I can fully look forward now to what next week brings. I'm sure I'll have periods when I'm fatigued, but with so many helping hands me and Si should be able to get a bit of time to relax. Here's hoping!

The photo is of Ed riding the jeep at Wild Place...he's starting to look so grown up!

Holiday Fun Fun Fun

We've just come back from our yearly holiday with our amazing friends Paul and Liz. This year it was Cornwall.

There was fun, there were frolics, there was icecream galore. Great times were had by all!
Luckily Paul and Liz are moving to Edinburgh soon so we will soon have happy times with our dear friends much more often!

This year seemed a reflective year, with lots of talk of babies, houses and travels. We marvelled this time about how things have changed over the last few years. Lib was a cuddly bundle of chubbiness the first holiday, a cheeky giggly wriggler the second, and this time a shy bright little button. My girl is growing up so fast.

We reminisced about how simple life was when Lib was tiny (even though at the time you think it's hectic and difficult) and I talked through the fears I had about having a second child. However, after looking at old photos and videos together, it reminded me that, though it was hard at times, so much joy comes from a child and the fears I have now are the same fears I had the first time round..and I coped fine. In fact, judging from what an amazing little girl Lib is, I'd say we did a darn good job!
As Elsa says/sings/cavorts in her ice flinging way -  "It's funny how some distance, makes everything seem small." [Yep, that was a Frozen reference...I have watched Frozen a lot recently. It has burrowed into my mind like a heart-warming weevil]
Well I've had my distance for a week, and I have returned home relaxed and completely ready to take on the challenges of Baby Numero 2.

And the lesson learnt here: Have. More. Holidays. :)

Despite it looking like a grey day, the weather was beautiful. 

This is just before we 'swam'....Lib didn't like the seaweed, which was hard to avoid at Polkerris.

Therefore 'swimming' was me carrying her deeper and deeper into the water until 

some brushed her leg. 

NB: It must be noted that after seeing a full-length photo of me in a swimsuit, I am determined to finally kick off some of this extra weight before I get pregnant again. I will dutifully keep you informed.

The Nursery Years

That's it folks!

I finally reached my limit.

After months of muddling through and making do, it was decided that there was no need to be struggling when there was a perfectly acceptable alternative. And that alternative is nursery. 

Let me explain though. Since things have settled after the house move, we were finally able to sit back and have a good look at the way things work. As much as I hated to admit it, I just couldn't cope with a rambunctious toddler 6 days a week any more (especially if/when I get pregnant!). I had reached my peak. 

For starters, I just can't lift her any more! I quickly realised I was really struggling with little things like lifting her out of the bath and in and out of the car. Turns out 34lbs is my weight-lifting limit*. The tricky thing though is trying to explain that to her! Every time I lift her now I can hear my muscles yelling "what are you doing, idiot?!"

I also just simply cannot keep up with her. At 2 and a half, it became more noticeable that Lib needed constant interaction, conversation and me having to create decent entertainment to avoid her sitting in front of the TV all day. All of a sudden, it became clear that she would benefit from something more. It wasn't just me having to send her off for a day so I can get some rest. Lib needed more interaction from others her age, and different stimulation. 

So we enrolled her at lovely nursery not too far away and she now goes every Mon and Friday. Big sigh of relief from me (and probably Sheils! :) I still can't quite get my head around having spare time where I don't have to rest. I feel almost guilty! I mean, I'm not at work. Lib technically doesn't have to be at nursery. I almost felt like I was doing her an injustice. Of course that's utter cobblers, for the valid reasons stated above. I console myself with the fact that even if I Mum didn't have MS she'd be struggling, and anyway Lib loves it, and is doing brilliantly so it's a big 'YAY' for all. 

Now...hmmm.....what to do, what to do?...................

* Huh. Turns out that's actually pretty good! Just read an article where the woman was struggling to carry her 2 year old. I've got 9 months on that! From now on call me 'Muscles Metson' please.

A week of firsts...and we're only at Wednesday!

First Number One:

Lib has he first proper swimming lesson! A bit late considering the age group of the other children there, but she loved it, which is the main thing. Si is taking her every week, which is a lovely thing for them to do together. I love swimming (even though I rarely do it nowadays......hmm....I really must go swimming) so having Lib confident in the water would be lovely. Especially seen as where we're going on our holiday has a pool.

First Number Two:

Lib goes to the dentist. No problem there....though I did have to get her to double check when she told me she had the right number of teeth.
Me: "Oh....but an extra one grew. Are you sure?"
Dentist (counting again): "Huh. Yeah, she has one extra......ok......erm....I've never come across that before..."
It would have to be Lib! :)

First Number Three: 

Lib goes to nursery. (Well...we went to look around, and I've signed her up). She absolutely loved it and was just..amazing. So well behaved, sociable and friendly. I had a weird mixture of feeling incredibly proud, to feeing incredibly sad because it hit me how quickly she's growing up. She'll thrive there though, and we both felt so comfortable there, that I know I won't have any worries leaving her...which is a big relief. There's nothing to make you feel guilty, quite like a screaming child begging you not to take them! I don't think I could have coped. After all, it's not like she's going in because I work and she has no choice. If she hated it, I would be sat at home trying to rest but constantly worrying about her.


Wow...we really have crammed a lot of stuff in so far this week.

Lib looking like she's completely zoned out. Either that..or she was 

trying not to gag during the re-count!